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New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Thanks to those who have got back to me
(Message started by: Jason_Taylor on May 1st, 2006, 4:03pm)

Title: Thanks to those who have got back to me
Post by Jason_Taylor on May 1st, 2006, 4:03pm
To give you a brief background on me, I am 30 years old, have been suffering for 7 years altogether now.
For the last year or so after I was properly diagnosed it has just been mad. I thought I knew what pain was until this last year and now wish that I didn't. I feel like I've been sucked into a big black hole, but with God's help and my faith and my family I know I can gat through this somehow. Here is all the medication I have tried so far and none of it has worked for me. Maxalt(Rizatriptan). Imigran, pills and injection. Nasal Spray. Verapamil, Prednisolone, (nearly killed me), Oramorph, M.S.T, Subutex(Buprenorphine). These are what I am currently on, High flow O2, 60% success, Topamax,Zydol(tramadol), Priadel(lithium), and Ibuprufen, this is my next lot to try but as yet not really having much effect. My neurologist next want s to try me on Methysergide have been told of what could occur and not really sure whether I want to risk it. Any help or advice any of you can give me would be great. Also has anyone been to a pain specialist and do you recommend it? Any help would be great, gotta go for now my wife is helping me write this as the pain is building for another attack, thank heavens all the kiddies are in bed. God bless you all and thanks again for your support.
Love from Jason.

Title: Re: Thanks to those who have got back to me
Post by tanner on May 1st, 2006, 4:55pm
 

 Jason, I just wanted to say welcome to famdamily.

I tried Sansert some time ago without success but I don't think the possible side effects are any worse than most of the other meds you listed. you wont know until you try.

how far did you push the verap? have you looked at any of the alternatives such as kudzu? or how about charlies water pushing or his other transference method. if you haven't seen it i'm sure he will re-post it. all you have to do is ask him.

keep us informed and it's good to meet ya mate.....tim

Title: Re: Thanks to those who have got back to me
Post by LeLimey on May 2nd, 2006, 3:30am
Hi Jason and Mrs Jason! (Psst.. register yourself and post, there's a lot of support here for supporters too - its not just "us" that get hurt by this and you are as welcome as can be to be a part of this family in your own right  :) )

How did you get on with the triptans Jason? I personally hate the way they make me feel but there are alot of people who get on fine with them and find them fantastic.

Topomax or Topiramate ranks as the single most awful experience of my life.. I completely lost touch with reality (and since most people don't think I have much of a grip on it at the best of times, that's REALLY saying something!)

Prednisolone.. don't get me started on that. Its left me with quite a legacy although, yet again, we all do react differently.

Buprenorphine, tramadol.. all "normal" painkillers.. been there done it got the rebounds! They don't, won't and can't help with CH as, quite simply, they work in a different way to CH drugs. I'm sure you know this but for the benefit of others who read but don't post, within a CH hit the blood vessels in your brain expand by up to ten times their normal size which is what causes the excruciating pain. CH drugs such as o2 and imigran (triptans) work by constricting those blood vessels and thus reducing the pain. "Ordinary" pain killers won't touch the sides - no matter how strong they are.

For this reason too I'm not sure how efficacious a pain clinic would be but my attitude is.. it can't hurt! Be sure and tell them HOW CH works though because otherwise they may just get on your one remaining nerve!

I was on Lithium but Camcolit, I don't know if the type makes a difference there.. but I know with Verapamil which is the usual first line of defence is greatly affected by whether you take the BP or SR versions. (Go for BP, the sustained release just doesn't seem to work so well for most people)

Alot of people swear by methysergide or sansert. You can only take it for six months though before needing a break. Its a heavy duty drug and you need to be aware of the potential side effects.

Going back to the o2 - the type of mask you use makes all the difference. There is a mask called a "clustermasx" (www.clustermasx.com) If I give one recommendation for the rest of my life this will be it. Its the single biggest improvement to my life since having CH. The difference with it is there is a cushion of air around your face which means you get a 100% seal so you are breathing O2 only. It also has a huge bag so you can breathe normally without waiting for it to refill. I can abort in 5-7 minutes using one and I don't leave home without it!

There are also other alternative treatments which have proved really successful for alot of people, especially people like you who seem to have intractable CH (my neuro's words not mine!)

Have a look for threads here about Kudzu and on www.clusterbusters.com for other options too. Knowledge is your best weapon.

Take care, keep us up to date with how you are doing and ask all the questions you like!
Helen

Title: Re: Thanks to those who have got back to me
Post by Richr8 on May 2nd, 2006, 1:09pm
Welcome, and glad that you found us since the comraderie here is the closest thing you will ever get to relief.  ;;D
It look like your trying all of the hot recipes.  For me it's a predtaper (60mg sustained until the cycle breaks usually 5-10 days. hate the stuff, but it works), 480 mg of Verapamil, Oxygen and Relpax (Eliptran).  I will be looking at some of the alterntive approaches for next season because the prednisone destroys me psychologically and physically leading to a long recovery after each season.

I have to agree wth Pegg (LeLimey) on the Topomax.  Not a good experience for me at all, but some have had success.  And as far as I know, you can drop the ibuprofen.  Your just pumping in stuff your liver doesn't need and will not work on CH anyway.

Title: Re: Thanks to those who have got back to me
Post by writer on May 2nd, 2006, 1:39pm
Hello, Jason--

Yes, Sansert worked for me.  Trouble was, it being an EXTREMELY close chemical relative of LSD, it sent me on some sickening, very unpleasant trips.  As a single mother, I was barely functioning.

I tolerated it for a while and then stopped. taking the drug, preferring the suffering to the side effects.  If you decide to take it, I hope you've been warned of the necessity for fairly frequent blood tests.  

Somewhere I read that Sansert has been taken off the market.  I don't know whether it's true or not.  Whatever--lots of luck to you, and a quick end to yoour siege of pain.

Barbara

Title: Re: Thanks to those who have got back to me
Post by LeLimey on May 2nd, 2006, 2:11pm

on 05/02/06 at 13:09:33, Richr8 wrote:
I have to agree wth Pegg (LeLimey) on the Topomax.  


Psst.. the lelimey redhead is Helen, the cute REDD redhead is Pegg! LOL (I'll take it as a compliment, I'd watch out for Pegg though, she has nothing to be flattered about!   ;) )

Title: Re: Thanks to those who have got back to me
Post by Charlotte on May 2nd, 2006, 8:41pm
Hello Jason.  Nice to meet you.

Lelimey - you're cute.

Charlotte

Title: Re: Thanks to those who have got back to me
Post by Redd715 on May 3rd, 2006, 2:27pm

on 05/02/06 at 14:11:08, LeLimey wrote:


Psst.. the lelimey redhead is Helen, the cute REDD redhead is Pegg! LOL (I'll take it as a compliment, I'd watch out for Pegg though, she has nothing to be flattered about!   ;) )



Sure I do Helen... there is no nicer redheaded person I'd rather be confused with.  But I don't think I'd ever be able to match your glorious Brit Humour....

Title: Re: Thanks to those who have got back to me
Post by Beastfodder on May 23rd, 2006, 10:39am

Eight years with the beast and I'm now the closest to remission I've ever been.  After the dreadful poly pharmacy of triptans etc, the best things that work for me are O2 and clusterbusters.

Best of luck in your search for relief.



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